think I’ve found my trigger.

[Patters56]

I have posted on here before asking for advice. Have always suffered on and off but the last 18 months have been awful. Saw a dctr last year who just gave me sleeping tablets, saw a dctr a few weeks ago who gave me pramipexole but after reading on here and other sites about the side effects decided not to continue and try to manage it with supplements. I am taking iron and magnesium but Sue had suggested triggers one of which was eastrogen (hrt). I had felt my rls had been worse since starting hrt 18 months ago and had specifically asked the gp last year if this could be a side effect to which he laughed. When I mentioned my thoughts to my husband he said 100% it’s been worse since then. I spoke to my hrt nurse about coming of hrt to see. I have reduced my hrt by 3/4 and only hace 1 pump of gel. For over a week now my rls has been so much better. It isn’t mentioned that much but I def feel this has had a major contributing factor to my rls being so bad. My ferritin level came back at 64 so would find it difficult to get an iron infusion but will continue with supplements. I obviously need to deal with my menopause symptoms differently but I def feel living with those is better than my rls, ironically one if the symptoms I gave for going on hrt was sleep, or lack of. I’m hoping that this continues, was a bit scared to post incase it’s just a fluke but fingers crossed it’s not, so ladies def worth thinking about if you are taking hrt.

[Madlegs1]

You are not wrong.

It is fairly well known that certain HRT meds trigger RLS.

I'm sure others will come on to advise alternative treatments.

Good luck.

[Patters56 in reply to Madlegs1]

It wasn’t until reading Sue’s advice that I knew hrt could be a big trigger, as I say I had specifically asked my dctr after being on it for 6 months, I wish I’d found this group sooner! As my hrt nurse said there are other things you can take to help those symptoms, it’s def a case of eating up what you can and can’t live with!

[Hidden in reply to Patters56]

Some people get immediate (that night) relief by taking the right amount of ferrous bisglycinate (25 to 50mg) at the right time (about an hour before bed) and on an empty stomach. A few people on here refuse to recognize this phenomena and instead tell people it may take months to see any kind of relief from oral iron. They say this to people’s detriment and I wish they would stop. For example, here are people who get immediate relief:

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

Lastly, this single post by RKM7 says it all:

RKM7 profile imageRKM7Hidden

1 year ago

You’re back!!! It’s great to read your post!!Thanks so much for your encouragement and advice! I remember noticing that I had good nights when I took the iron and then bad nights when I didn’t take it. Your advice to take it every night made sense to me and It has made such a difference! I can only hope that others on this site will try this approach!! I just completed 3months of berberine so as you have advised, I’ll take a month off. Yes, my cholesterol has come down too!! I’m thrilled!!

I also continue with fasting overnight and that helps! Whenever I eat later in the evening or have sugar in my diet the RLS acts up again. I would still be suffering every night if you hadn’t recommended these changes! I plan on slowly reducing my Gabapentin dose over time. I’m hopeful that I will only need a lower dose or maybe none at all.

Patters, I could give you (and the naysayers on here) about half a dozen more examples of iron having an immediate effect. This phenomena doesn’t work as well for people coming off DAs - meaning it doesn’t completely obliterate the RLS, but I’m sure it still helps to some degree, but other drugs are still needed. It also doesn’t work for people on SSRIs or high dose HRT. It might work if you took a barrel full each night, but you don’t want to do that. When I was taking .5mg of melatonin I needed 25mg of ferrous bisglycinate. When I went to 1.0mg of melatonin I needed 50mg of ferrous bisglycinate

[SueJohnson]

That's great!

On your iron tablets , take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[Dougg]

Patters56 -

I'm glad you've been able to find some relief. This comment probably counts more as a rant than anything else, but imho any doctor who laughs at you for suggesting a possible connection between hrt and RLS doesn't deserve his/her license to practice. Any doctor worth their salt should always be listening to their patients and keeping an open mind. If you have the opportunity to do so, I'd suggest finding a different doctor; one who respects his/her patients. I'm sorry you weren't heard. Sadly, that seems to be a common reaction from some docs. The good news is that there are good docs out there who do listen and are open-minded. I hope you can find one. Good luck!

[soupersuzy in reply to Dougg]

Quite agree Dougg. Don't know where you are but here in UK I'm afraid our healthcare system is appalling. Lucky to see the same GP twice and of course none of the them have got a clue about how debilitating RLS/PLMD is. I was made to feel like a time waster.

[Apricotjam]

Interesting ! I am also on HRT and my RLS has more often than not been worse. Was taking 8mg codeine combined with paracetamol- one every night gave me 4 hours reprieve! After 3 months worried about addiction to it so stopped but terrible insomnia. Gabapentin or Pregablin next stop!

[AmyMac5 in reply to Apricotjam]

I can't comment on HRT but I would point out that 8mg codeine is a very small dose and shouldn't give you cause to worry about addiction. I've been prescribed co-codamol 30/500 for many years, two taken at bedtime was a lifesaver but still had RLS fire up around 4am. From advice on here I started on gentle iron, got my ferritin up from 55 to 125 and to my amazement that sorted it within a couple of months.

When I needed help with low mood I again looked for advice on here and asked the GP for Trazadone, which hasn't affected my RLS at all. Interestingly, I've been able to drop one of the co-codamol when taken along with 50mg Trazodone at night.

You might have at least a partial answer to your RLS in codeine/paracetamol, please don't let worries about addiction stop you finding out if it can really help you.

[Apricotjam in reply to AmyMac5]

Thank you so much for your reassurance, I appreciate it!

[SueJohnson in reply to Apricotjam]

Welcome to the forum. You will find lots of help, support and understanding here.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.

You may know this but in case you don't: Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Frustrated-RLS]

I would love if people would share alternative to HRT menopause treatments that do not exacerbate RLS. I need something but staying away from HRT as it is an RLS trigger. What alt options have people found?

[Jukebox55]

Hi there, my first advice is change your GP. You need support not scorn. Do not take pramipexole… take the iron as advised by sue j and jools. Do not take magnesium at same time. Take the iron on an empty stomach. I took mine in the night (awake so why not?!). Itook 6 months to get off prami and to up my ferritinnto almost 100. Make sure your blood tests are a morning fast as advised all over this site. I have been insomniac with RLS and god knows what else for 30 years… decided to start HRT a month ago now that the RLS has STOPPED… do i hear trumpets??? But i am not there yet! Still not sleeping but its different.. without crazy legs! I do a lot of shouting in the night! My poor partner! But my doc has been open to me educating her about RLS and read documents from mayo clinic and has worked with me all the way. So that’s where i am!

[Birdland]

On a scale of 1 to 10, 10 being worst, my RLS went from a 2 to an 8 after starting HRT. Damn shame because HRT helped me in so many other ways. My mistake was to start throwing meds after the RLS instead of stopping the HRT right away. Lead me down the dopamine agonists rabbit hole.